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‘Systemic sclerosis is part of my life’ - the story of eight combative women

The ground beneath their feet gave way after the rare condition systemic sclerosis invaded their lives. Back home, googling and watching pictures of the disease on the screen set off a wave of panic. There was no turning back. This was their ordeal. But these eight wonderful women from seven different countries who are unfortunately experts by experience, appear to have the same willpower in common. As one of them puts it: ‘I decided to see systemic sclerosis not as my enemy, but as part of me, as part of my life.’

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Once diagnosed with systemic sclerosis (SSC), also known as scleroderma, nothing will ever be the same. Uncertainty about almost everything around the disease, except for guaranteed fibrosis of the skin and internal organs, makes life difficult of those who suffer from it. As it’s a very rare condition, which predominantly affects women between thirty and fifty, there are only a handful of unlucky ones in every corner of the world. Eight of them are captured and connected with each other through a film gallery, each telling their story about living with systemic sclerosis. ‘It was like a catastrophe. I panicked, I cried. I was so upset,’ Monica from Sweden says, while combining a smile on her face with a little lump in her throat. Rute from Portugal remembers that the diagnosis also dropped like a bombshell and turned her life upside down. ‘But then I thought: I was already here and then the disease arrived. So together me and the disease, we have to adapt. I will have to accept it because I have a daughter to raise.’ Being able to raise the kids, was also the biggest concern of Grazia from Italy. ‘I was somehow relieved when the doctor told me it was going to be a long battle. So my kids didn’t have to be afraid of losing me. Eventually I was able to not see my condition as an enemy, but as part of my life.

I consider my disease as a travelling companion; we have to keep going together, although we will never become friends.

'Well it is limiting. I can’t climb the stairs for instance. Then I have to think about it, but just for a moment. Because I don’t want to think about it longer. I want to do whatever I want to do, I want to live.’ Rafaela from Spain and Alex from the United Kingdom don’t let their condition beat them either. Rafaela: ‘I consider my disease as a travelling companion; we have to keep going together, although we will never become friends.’ Alex adds: ‘If you would have told me twenty years ago that I would have pain every single day over the next twenty years and would have over sixty major surgeries and I wouldn’t be able to breathe properly, I would go mad. The truth is, I can’t make myself better, but I can detach myself from the drama of it. Fear and anxiety will make the disease worse. I allow myself moments of struggling with my condition. But then I close the box and move on.’ Anna from Hungary, Lorraine from Canada and Teresa from Spain embody the same determination: their condition is not going to take over their life. Anna keeps riding horses, Lorraine keeps teaching her class and Teresa keeps travelling. At least, as long as possible. Their condition gradually demands physical adjustments, but that’s the only capitulation they are willing to make. As Teresa puts it: ‘I don’t know what tomorrow will bring. That’s my ordeal. But now I enjoy my life to the max.

Anna from Hungary, Lorraine from Canada and Teresa from Spain embody the same determination: their condition is not going to take over their life.
Source:
This article is based on interviews from the series: ‘More than Systemic Sclerosis: The Inside Story.’ This global initiative from Boehringer Ingelheim highlights the importance of understanding the ‘inside story’ of each individual living with systemic sclerosis. The series features eight patients from seven countries, each telling their story about living with this rare condition.
 
Link:
https://www.boehringer-ingelheim.com/respiratory/systemic-sclerosis/inside-story

 

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